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January 2019 chemo starters

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Re: January 2019 chemo starters

Thanks blue tit. I had a high temp, felt 'jippy' and then had the squits on the loo- called hosp and they sent me straight to a and e. Now having  iv antibiotics amongst other injections etc. Very upsetting and means our half trio plans are having to be cancelled. So no not difficult - I knew I wasn't right. Just hope they are happy with my bloods sooner rather than later. 

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Re: January 2019 chemo starters

Oh no! Recover quickly!!!  Sending hugs xxx

 

(What happened, was it to do with your temperature? Was it easy making the decision to go to A&E?)

 

Sorry for the questions, please don't reply til you're ready... xxxxxxx

Member

Re: January 2019 chemo starters

My turn! A and e this morning and blood ward until those white blood cells get back up 😭

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Re: January 2019 chemo starters

Will be thinking of you tomorrow Bluetit.  Loads of love and luck xxx

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Re: January 2019 chemo starters

Glad you have your regime DaisyDi.

I'm on 4x EC then 4x T.  My 2nd EC will be in the 19th as long as my bloods are ok.

My radiotherapy will also be a big area like yours.

Thank you for worrying about me, that's lovely to hear - sorry I hid - I kept reading threads that scared me, so I needed to keep my distance for a bit.

It's really hard to juggle treatment, for me it's trying not to get all the bugs the kids bring home from school.  BUT, we'll do it & we'll be supported by all these amazing ladies here & we'll encourage and cheer each other on.  Step by step, crawl by crawl, we'll get there xxxxx

xxx

Member

Re: January 2019 chemo starters

God I was so worried about you Bluetit. So pleased you've reemerged!  I found out this week I will start on Monday 25th Feb  6 cycles 3x FEC and 3xT but not sure I will manage all and have agreed to a review after first 3.  I really do not want chemo, who does?  I am so scared and I just cannot bear the thought of losing my hair.  I will cold cap and I have thick hair so fingers crossed.  My bone scan is on Friday but they have said the treatment wouldnt change anyway.  Are you having 6 cycles too?  Oncologist also said that when radiotherapy comes around they would do my neck too to zap those lymph nodes.  Also this week I have an echo and ecg and meeting at the onco unit.  My whole life has been taken over by this.  My poor mum has dementia and is in a care home and now I am really frightened to vist her in case of bugs but I wont be able to stay away for months as she asks where I am if I dont go.  When is your next treatment?

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Re: January 2019 chemo starters

DaisyDi- soooo happy that your CT was clear.  Do you know what drug regime you'll be on yet?   I've just had another CT - this time a full bone scan.... hoping it's to just tick the box!

 

Trixie lady - My privates started moulting this morning too! I'm cold capping but don't think my head hair will be far behind as my scalp is a little uncomfortable. 

 

EC 2 will be on Tues.... EC 1 Week 1 was hard but do-able.  I was on ABx for throat infection at same time which didn't help side effects! I got really anxious & panicky on day 6 & now wonder if that was the steroid crash? Will pay attention to day 6 next time round. This week I've felt good - I just get tired quickly.  

 

I'm really struggling how to balance not isolating myself against not being tooo risky with socialising... Any tips would be greatly welcomed.

 

Thank you xxxxx

Member

Re: January 2019 chemo starters

Hi G 

Thanks you've just answered my question 13 day into my first chemo and still have my hair was wondering when it might start going noticed today other more personal area's were on the move xx

Sorry your 2nd one hasn't been good mines 25th Feb dreading it  trying to stay positive xx big hugs we're right somewhere near xx

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Re: January 2019 chemo starters

I'm same as you LB but my 3rd EC on Tues. I'm half dreading it and half wanting to get it over, as I'll then be one step nearer to EC4 which is my half-way point. Cold capping again and hoping I don't shed as much hair after number 3 as I did after number 2. 

 

Stuckat14, I do the same. 2 lymph nodes positive and told my cancer had 'aggressive' features like extra vascular invasion (cancer cells in a vein in the removed tissue surrounding the tumour) and extranodal extension from one cancerous lymph node which makes me think it's still floating around in my body and then I too think I couldn't go through all this again. Then, when I feel better, I think the chemo will kill it all and I have to remain mentally strong. I go back and forth a lot and it tends to be late at night.

 

Good luck to everyone doing or just done no 3 xxx

 

Member

Re: January 2019 chemo starters

Hi , isn’t the 3 am to 4 am wide awake club amazing , not 😬

I’ve been using the Breethe app , well worth it , at those times in the morning , they even have a going through chemo meditation, just thinking about your breathing helps your head change the subject ( if that makes sense ) or I watch utter rubbish I’ve recorded , it doesn’t matter what time it is as I can snooze the next day 💤 this forum has been brilliant as all us ladies all know exactly how we feel , I’m on 2nd ec , 9 days ago , have the achy muscle , fluey feeling and a few hot flushes but it’s my mental health that I’m really trying to work on , 

I write a diary , I put every positive quote I see in my phone , I talk about “it” when ever it’s doing my head in and I except that sometimes I’m going to feel s@@t ! We’re all in this together ladies , we’re all here for each other and I think it’s brilliant 😄 big hot flushy , tired , achy , sore , hugs to you xx and don’t read google ! 

LB
Member

Re: January 2019 chemo starters

My 3rd FEC coming up on Tuesday.  I'm not looking forward to it.  I've been "nesting" all week - everything ready for a week of fog.  I, too, must try not to read too much information before bed - too many hours looking at the ceiling in the dark.

 

Hugs to all xx

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Re: January 2019 chemo starters

Hi all- im just coming out of ec2 fog (although a much lighter fog than ec1). I was up from 3am this morning reading 'predict' website and just worrying bout the future. Consultants have said 'cured' and I've as much chance as anyone else to reach 80 after all my treatment but I had 9 positive nodes and just know that means my chances of recurrence are higher, whatever the statistics. I can do this, but I can't do terminal and I can't even do this again. Sorry I'm just having a moment and thought if anyone will understand it's you lot.  

 

Hugs to those of you on ec3! Half way through in some cases I think so that's good! 

 

Chins up, I'll climb out of this hole soon xxx

G
Member

Re: January 2019 chemo starters

Third EC down and I too most definitely did not want to do it...been a bit of a grumpy thing all morning!!!  Not helped as it is half term next week and I am going to be useless (I too will disappear on here for a week at least) which makes me cross that it is impacting my girls....to be fair, the other treatments don’t fall too badly and as I go on until end of May that’s not bad given there will be both Easter and May half terms (trying to convince myself 😂).

 

I have had my dose adjusted down today due to how awful I felt last time, and then they have also had to adjust the E chemo down some more after my blood results came back  (liver function a bit comprised) so I am really hoping this will all serve to make things better 🙏.

 

Anyway, sending lots of kind words to anyone still suffering side effects or about to embark 💗

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Re: January 2019 chemo starters

Hi All,

 

Well it’s that time again, getting my EC3 today. 

 

Got the usual anxiety but I need to get on with it. 

 

I hope everyone is doing OK.

 

I am off to hibernate for about a week!

 

Take care everyone, speak again when I feel more human 😊.

 

xxx

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Re: January 2019 chemo starters

Re my message above,  and talking to others, Im beginning to think my "episode" over the park was due to panic attack or body in shock.  Never experienced that before.  Just hope it never happens again . x

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Re: January 2019 chemo starters

Hi Bluetit, hope you are feeling ok.  I got my results from CT today and all was good so I will be starting chemo in a couple of weeks so not far behind you ...

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Re: January 2019 chemo starters

Had 3rd FEC last Thursday 7th.  Didnt feel too bad day 1 2 3 while on the Emend.  Since then been taking prm prochlorperazine 3mg and/or Domperidone 10mg .  Did anyone find either of those tablets better than the other.  I seem to think prochlorperazine 3mg works better.  Just wondering what others are finding.  Still feeling icky. 

Other day (monday) took my dog for a short walk.  I had just taken both prn tablets as was advised.  Got to field (about 5 mins walk) then found I couldnt walk anymore. It was like I was frozen to the ground. Walk 10 steps and the frozen again. Of course decided to come home and managed it slowly. Had district nurse round about 2 hours later to flush PICC and told her what happened but she didnt seem too bothered and said well done for coming straight home....   Havent been out since so poor dog has no walkies.  Has this happened to anyone else.  Was wondering if it was because I took both prn tablets near together.  Anyway, taken Domperiodne 10mg this morning and still feel icky but now to scared to try the prochlorperazine.  Such a nice day. Would love to go out for a short walk with the dog.  

 

Hugss to all Smiley Happy  

LB
Member

Re: January 2019 chemo starters

Hi Neecy since I went for the shave I have been wearing a small woolly beanie to bed 🤗

G
Member

Re: January 2019 chemo starters

Aw thank you MaMa JuJu, you are very kind and these words are even more amazing when I know you are going through the same, means a lot ❤️

 

Hi Val Beach, they are the eylure c lash (there are three styles to choose from especially for us).  I don’t know what they will be like but a good make and nice to have them in your back pocket 🙋🏻‍♀️Xx

 

I have just had a really good friend over for lunch and feel brighter again (despite me only eating cereal 🤣🤣)

 

xxx 

Member

Re: January 2019 chemo starters

Hi G,

 

i am so sorry to hear that you haven’t had a great time so far. Hang in there.......it’s a means to an end. 

 

It usually takes me about 9 days after my treatment to feel more human and then I get stronger each day after that. Don’t get me wrong, I don’t feel on top of the world but I do feel better than I was feeling. 

 

I was pretty active before the treatment but now I just tend to walk with the dog and get some fresh air. As long as I am doing something I am happy. I will get back into it once the treatment has finished. 

 

My eyebrows and and eyelashes are still intact but I am guessing they will fall out quite soon. Thanks for the tip about the eyelashes, I will definitely have a look at them online. I do need to get booked onto the Look Good Feel Better course. 

 

G, please don’t give up. You are doing amazing and this part of the treatment will be over soon. I just call is a temporary blip in the system 😂😂😂😂. 

 

Sending you lots of love and hugs.

 

MaMa JuJu xxxx

 

 

Member

Re: January 2019 chemo starters

Hi , 

do you know which eyelure lashes are best , I’ve just been on boots website and there’s loads 😄 thankyou x

G
Member

Re: January 2019 chemo starters

Hi Neecy,  thank you!! I did manage to snooze a little from 6, typical, hope you went back too! You can buy sleep hats which are super soft on amazon (I don’t need one but I got one thinking I would!).

You will have a good time on Monday...you may be the one to share the eyelash product info as they didn’t know about it at mine, you could be star pupil 😇.

Have a good day xx 

 

Member

Re: January 2019 chemo starters

Hi G, sending you a 5am virtual hug! I hope you have managed to get back to sleep, I've been awake since 3 too! I had my 1st EC on 30th Jan and have shaved my head in order to take control... In fact I think that is why I'm waking up so much because my head is so cold! Thanks for the tip about the false eyelashes. I've not heard about those. I have the Feel Good course booked for Monday so will no doubt find out more tricks. I hope you feel better with next cycle, I had some extra anti emetics which seemed to work. 

G
Member

Re: January 2019 chemo starters

Hi everyone, I have been mostly quiet on here since EC 2, EC 3 this Friday same as MaMa JuJu (I have 1 more EC after that (4) then 4 tax so not half way yet). I haven’t been contributing on the forum (other than the occasional hug to people) as really not felt like it.  Not had one day in this whole 2nd cycle where I haven’t felt unwell, varying degrees but evenso pretty rubbish and the tiredness is dreadful too.  Not one day of feeling close to normal.  Really dreading number 3 as I know it is compounded each time ☹️ (Think that is why I have been awake since 3am!).  I too got teary Val on the steroid come down, so hopefully that passes for you ASAP.  I am also really thinking I want to stop now, as far as we know the cancer is out, I have yet to have recon, I have yet to start tamoxifen, I want this bit of the process to end now.  I know I won’t stop it for my husband and our 2 daughters sake but I have absolutely had enough, sorry for sharing. 

 

I have been keeping up to speed with how everyone is doing and it is a bumpy road.  I have especially been empathising with the hair!  My hair, despite cold capping, started to shed on the weekend before my 2nd chemo and I had to go for the shave the same week. Despite always having long hair, it did feel better after doing this, the uncomfortableness and the anxiety around it going was nipped in the bud and a new normal to get on with.  This weekend, the same weekend in the cycle, the remaining shaved hair is coming out so assume I will be skin bald as week goes on, another new normal looming!!  I too have a wig (long, real hair one, much thicker and nicer than my own hair ironically) and have worn a couple of times just on occasional school run etc to get used to it but it is hard, reminds me more that I don’t have my own hair than when I am bold or in a hat...think I fiddled with my own hair a lot and not the same in a wig as I am constantly worrying I have moved it so it doesn’t look right etc checking in my handheld mirror with not much subtlety 🤦🏻‍♀️

 

How are everyone’s eyelashes and eyebrows doing? Mine are ok but dreading them departing.   I did on the bright side do the ‘look good feel better’ course last week to teach u how to do makeup etc when undergoing treatment and you also get a lot of goodies to come away with so if u haven’t done this yet then get booked on!  I have also ordered some, just launched,  eylure chemo lashes from boots (fake lashes made especially for chemo ladies so gentler glue and a wider band to adhere to skin) hoping I won’t have to open the box but at least there as a back up.  

 

Hows everyone doing weight/fitness/exercise wise?  I used to run before this a few times a week and do a Kettles and a Pilates class but  not run once and only managed a couple of classes, really hoping I can improve here as despite so far not putting on weight as far as scales concerned,  I am definitely looking and feeling far from how I was.  This is also not helped by food I feel able to eat due to feeling sick which is not what my body reacts well

to.  

 

Right, going to try and get a little more sleep.  Massive hug you amazing ladies xxx 

 

 

 

Member

Re: January 2019 chemo starters

Hi Val,

 

I felt exactly the same around 5/6 on EC2 and I was so teary and anxious. The nurse said that it was more than likely to do with coming off the steroids but I also started to lose my hair properly and even although I had a pixie hair cut it still affected me mentally as it was the first time I saw myself bald. I looked in the mirror and got a fright. A couple of days later I started to feel more human again and I am so used to my bald head now. I guess that was just another hurdle to get over. 

 

I wore my my wig for the first time today and felt very comfortable with it on when I was out and about so that’s another tick in the box. I am a hat lady so I don’t anticipate wearing my wig that often. 

 

EC3 is on Friday so here we go again!!!! After this one I will be half way there. 

 

I hope everyone is doing as well as can be expected. 

 

Sending lots of love xxxx

 

 

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Re: January 2019 chemo starters

My scalp was sore for a few days before I lost some hair but it seems to have calmed down now , I’m cold capping so fingers crossed i will have some hair left after this . Fingers crossed for your hair too x 

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Re: January 2019 chemo starters

Hi Val, I felt the same on day 6 after 1st EC - really low & anxious.  The following day my mood instantly lifted.  I wonder if it was due to the steroids stopping & if it'll happen again on EC 2. 

My scalp/ hair is starting to hurt tonight (day 13) - is this the beginning of hair loss?

xxx

LB
Member

Re: January 2019 chemo starters

Hi Val I felt exactly the same around day 6/7 I really upset my husband when I said I couldn’t go through it anymore - the next day I felt a lot better and now a week on I feel so much better again 🤗 we can do this 🤗🤗 

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Re: January 2019 chemo starters

I can’t seem to start a new conversation on this site and have to go into reply ? Anyway , I felt rubbish today , mentally 😬 6 day after 2nd ec , felt like this last time 🙁 thinking , can I do this ? What’s the point and stupidily googling about triple neg ( which I have ) and only taking in bad stuff , my lump is shrinking and onc quite happy so i need to pull myself together x 

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Re: January 2019 chemo starters

Thanks for sharing LB, it’s a great read xxx

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Re: January 2019 chemo starters

Hey Perko

There's a few of us cold capping on EC, keep the faith Smiley Happy I am now day 12 after EC no. 2 and started shedding last week and it's been pretty bad and of course I'm thinking if I lose this much after rounds 3 and 4 of EC there'll be hardly anything left (!) BUT I will keep going because it does seem to protect hair follicles and result in faster regrowth from everything I've read online in facebook groups, on breastcancer.org and generally. The only thing I can say is make sure your cap is touching your head at your scalp. If necessary tie a pair of tights around it , or even more than one pair, it needs to be tight and touching all of your scalp. 

 

I know it's upsetting and if I could have one wish come true it would be that no one going through chemo for cancer has to suffer the hairloss too, it's like a final punch on top of all the other crap we get but we will all get through. Hang in there xx 

 

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Re: January 2019 chemo starters

Sorry , this is a reply to Lorraine 1  😄

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Re: January 2019 chemo starters

I’m not sure what I’m having after ec , I couldn’t take it all in at the time 😬

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Re: January 2019 chemo starters

Holland and Barrat had the almond Carrier oil and 100% rosemary essential at half price a couple of weeks ago. Might be worth checking if it’s still there xx

I strongly believe that Vit D, complex B and as Lorraine.1 suggested a Biotin supplement too. All of the above are good for nails and hair.

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Re: January 2019 chemo starters

Hi team January, first venture onto these boards for me...(couldn’t even figure out where/how to post!!)

 

I’m cold capping on EC but still losing so so much hair. It just seems to be constant the past 10 days or so, every time I take my beanie off new clumps of precious hair shed. I was expecting a big-ish shed after each cycle but anyone else getting this continuous hair loss? It’s like Christmas tree needles the day after Boxing Day...

If I can, I’ll keep going with the cold cap - has anyone had experience using it with big bald patches on top? Any tips most welcome!

thanks everyone x

LB
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Re: January 2019 chemo starters

Loraine. 1

Thankyou for the oil tip I will get some in the next couple of days. X

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Re: January 2019 chemo starters

Val, are you on 4xEc then 4Xpaclitxel like me? I've heard/read any lost hair starts growing back on pac and, like you, I have decided to cold cap to the bitter end and just hoping what hair I have hangs in there till pac! 

 

Sunnydaze - I'm so happy the rosemary oil has helped you/your scalp! X

 

Stuckat14 soooo nice to read you had an easier ride with the second round. Fingers crossed you stay uninfected in week 2!

 

Gocat you sound like me, I have 'coverage' (ie know one would know but me) but I spent this week really stressing about what will happen after EC 3 and I only stopped stressing when the shedding decreased to a few strands lately. I

 

LB - so happy to read your scalp is better - also almond oil is very soothing as a carrier oil  mixed with rosemary for growth. I 100% empathise with your second to last sentence, it is unreal and I can't even explain how I feel some days to people, between the side effects and hair anxiety I don't recognise myself. 

 

Big hug to you all xx

Member

Re: January 2019 chemo starters

Hi All

i had  #FEC3 on Friday. So far, so good.....I was floored after FEC2 , so I’m pleased it’s better this time around. Half of the way through now. 3T’s to go....

i have been rubbing almond oil and rosemary oil into my shaven scalp and I’ve still got a lovely fuzz of hair. Thanks for the tip, I think the rosemary oil definitely helps. Good luck all you ladies out there. We struggle on, wading through the treacle xx

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Re: January 2019 chemo starters

My doc said the bit after ec was the worst bit for hair loss 🙁 I think it depends on person , I’m cold capping all the way through no matter what tho 😄

LB
Member

Re: January 2019 chemo starters

Hi all I hope that those of you just getting over their last sessions are doing ok. I’m day 12 after FEC 2 and definitely feeling better again but I was wretched for a few days ☹️ I went to my friends yesterday and mentioned that the remaining stubble was very painful- I thought it would have all gone by now but there was about 20% left and every time my hat or wig or fingers caught it - ouch. It was like sticking hundreds of pins into my scalp. My goddaughter looked it up - apparently when the hairs are attached to the follicles they are padded by the follicles but when the follicles have died off and there are still hairs they stick in. So we got out the shaving cream and towels and a good time shaving off what remained 👍 we made a bit of fun out of it - after all how often are you going to do this for/with a friend 😊 The outstanding result was a much happier head 😀 the wig felt much better and when I went to bed in my going to bed hat I was so much more comfortable 😊 Reading this I still can’t get my head around the fact that I’m in this place but you have to make the best of everything if you can. Hugs to all

LB 🤗

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Re: January 2019 chemo starters

Gokat and Lorraine thanks for posting. I've just had my second ec and have found it sooo much easier so far- don't get me wrong I'm not going anywhere and I still feel sick and very tired, worse after being awake since 2am today. But emend and ondansetron seem to have made a big difference, I also took a cyclone in the evening so now I'm crossing my fingers that the lactulose works- im not eating a lot at all. I've been telling myself in a third of the way through but the next two weeks are still going to be full of worry over infections etc- my 5 year old is in bed next to me coughing his guts up! 

 

Anyway- hugs to everyone,  is it too early to start talking about plans for the summer?

 

Xx


@gocat wrote:

Hi had my 3 rd chemo of FEC last Thursday.  Worse part was the cold capping.  Think it was too tight on the forehead bit.  Was really glad when it was taken off.  Still got good coverage of hair but still lost a fair amount too.  Was thinking of not doing it for the T bit but I asked a nurse if you still get hair loss with T and she said yes.  I thought I read somewhere you dont.  

Anyway, not so much nausea this time round.  1st one was really bad.  2nd cycle not so bad and this time ok so far.  So fingers crossed I dont get it now.  

 

Hugsss to all Smiley Happy  


 

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Re: January 2019 chemo starters

Hi had my 3 rd chemo of FEC last Thursday.  Worse part was the cold capping.  Think it was too tight on the forehead bit.  Was really glad when it was taken off.  Still got good coverage of hair but still lost a fair amount too.  Was thinking of not doing it for the T bit but I asked a nurse if you still get hair loss with T and she said yes.  I thought I read somewhere you dont.  

Anyway, not so much nausea this time round.  1st one was really bad.  2nd cycle not so bad and this time ok so far.  So fingers crossed I dont get it now.  

 

Hugsss to all Smiley Happy  

Member

Re: January 2019 chemo starters

Hi all

I have been suffering with a very sore arm since EC no. 2 (my chemo arm). I am due to have my picc line fitted next Thurs 14th and am hoping it calms down before then. I'm on ibuprofen and using warm compress. I have pain/tenderness on inner elblow and just above it where the picc line will be fitted. Anyone got any tips of anything else I can try? 

 

Think I lost about 30% of my hair since EC number 2 - like falling out every day for last 10 days but still have full coverage (all be it thinner) and decided to keep going as only 2 more ECs to go then it's paclitaxel. Not sure if anyone else here is cold capping and how you're getting on?

 

Hope everyone doing ok and less nausea xx

 

Kip
Member

Re: January 2019 chemo starters

How apt!! Thanks for posting... Xx

Member

Re: January 2019 chemo starters

Thankyou , what she says is so true x

Member

Re: January 2019 chemo starters

Thanks LB. A good read - and true xx

LB
Member

Re: January 2019 chemo starters

Hi all this is a brilliant piece http://www.tickingoffbreastcancer.com/the-loneliness-of-a-cancer-diagnosis/. 

 

Hugs to all xxxx

Member

Re: January 2019 chemo starters

Hi ,seen my onc today , he said some people do get bruising , itching and pain around lump , everyone’s different and reacts differently . He also thinks the lump has shrunk a bit too which I didn’t think would happen for awhile which is good 😄 

Kip
Member

Re: January 2019 chemo starters

hello Ladies, I did reply this morning with but it seems to have disappeared...anyway...I'll try again.. forgive me if this comes up twice at some point..

 

Mama Ju Ju - regarding Hand and Foot Syndrome,  I had a word with a lady from my June Chemo thread who had this and this is what she said:

 

It’s a serious side effect and I had to stop Docetaxel immediately.  I found even if I’d walked a short way my feet felt like they’d done a 50 mile hike.  The toes blistered and the sole and sides of my feet turned bright red.  The skin then started peeling off.  The spaces between my fingers also started turning red and blistering especially between my thumb and first finger.  Very painful.  If so they should contact the chemo hotline and ask to be seen by an oncologist who can confirm and alter chemo regime if necessary.  I also struggle with neuropathy from the Paclitaxel so I really would encourage them to listen if the onc  say she needs to switch/stop. 

 

Don't want to worry you but worth getting it checked to be safe.

Take care

Kip

xx

LB
Member

Re: January 2019 chemo starters

Hi MaMa juju - I have felt just the same - chocolate is a definite Nono 🤗 I was advised to keep some pineapple chunks in the fridge and dip in whenever my mouth feels awful - I find it helps and tonic water with a slice of lemon 🍋 and anything spicy and salty like crackers. I hope you find something that your mouth likes🤗 I have turned a corner again and I feel much better than yesterday - I felt very tearful 😢 hugs to all 🤗